posted
Hubby had his repeat brain SPECT scan done at Columbia Presbyterian on Tuesday. Pictures are not encouraging -- visually looks slightly worse than 3 years ago. Waiting on report which may take a week.
Has anyone ever been told that their hypoperfusion was a result of babesia and not from lyme?
After 6 months on IV Rocephin and 3 months on IV zithromax hubby is terribly disappointed and discouraged right now.
Wish we had been able to do the test 3 months ago when hubby felt the best he had since he got sick 10 years ago. He has been slipping symptomwise since then -- especially more consistent headaches and dizzyness which we feel are babesia related.
seekhelp
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posted
I thought I read Babesia can cause this, but I'm not 100% sure. I'm really sorry to hear this Bea. I thought SPECT scans were multiple months behind the 'real picture.'
This WA-1 story is tough to understand. I'm having multiple blood smears being done through sources and so far no one can find any evidence of this parasite. I know Clongen says it invades tissues more than blood. I don't know what to think. I would really like to know just how many positive PCR specimens CLongen has found and where?
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I am not sure how close a SPECT scan is to "real time". I do think that it is probably closer than an MRI though from what I have read.
Hubby did talk to one of the technicians at Columbia who actually said that they had had tickborne patients who had had all of the different movement disorder symptoms he has had -- not all in the same patient -- but at least he was reassured that there are others with dystonia and tremors and myoclonus and muscle rigors etc etc.
And the guy actually disucssed neurotransmitters and meds and knew as much if not more than the LLMD neuro we saw recently.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hambone
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Bea,
When they do a SPECT scan, why kind of substance is it they inject you with?
And most importantly, how does your husband handle it? Does he react to it?
Maybe the report will be better news than what the pictures looked like.
Posts: 1142 | From South | Registered: Dec 2010
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posted
My SPECT scan had the same results and I had no improvement with Lyme treatment but then tested positive with a high titer for Babesia.
I believe Babs can cause these results. There's just no studies between the effects Babs has on a SPECT scan there's only really been focus on Lyme.
Posts: 306 | From NY | Registered: Sep 2010
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posted
Hambone -- Intravenous injection of 22 millicuries of technetium 99m-HMPAO -- whatever that is. Actually it was so quiet in the room hubby said he almost went to sleep so his reaction to the radioactive tracer was not the problem.
NYBasketball -- I agree. Hubby's worst crashes have always seemed to respond to babs treatment so that is what we hope is going on. The first SPECT was after fairly aggressive babs treatmnent which included some primaquine and chloroquine.
------------------- From the report -- Impression -- Progressive decrease in cerebral cortical perfusion in a heterogenous pattern, now moderate to severe.
Previous report 3 years ago said mild to moderate. But from a simple visual comparison it was obvious to both hubby and I that there was much more blue and green in the current pictures -- the colder colors.
Right before his crash in December hubby's LLMD thought maybe he was overmedicated. Hubby and I did not agree -- felt that he needed to switch meds and focus on babs. The LLMD neurologist in late August said to continue the IV Rocephin and IV Zithromax indefinitely -- we think hubby needs IV's but needs to be rotating between different meds. A one time consult with another LLMD gave a 3rd plan. He suggested aggressive babs treatment based on the Babesia duncani titre of 1:2048 from December.
Anyway I think all 3 docs above would be very surprised at the SPECT scan results. Hubby does not have significant brain fog except when he crashes -- at those times he has altered mental status -- may not know me (wife of 17 years) and makes comments such as calling the nurses martians and saying he doesn't want to be in this hotel (meaning hospital).
The main symptom that is different than in the past is his headaches. That didn't even used to make the top 5 or top 10 on his symptom list. He has a high tolerance for pain so rates these as 3 or 4 most of the time. Around Thanksgiving he had a room spinning vertigo attack following his daily IV Zithromax infusion and he has been going downhill since.
We stopped the IV Rocephin after 7 months and the IV Zithromax after 4 months over a week ago. No obvious change in symptoms from that. So we are hopeful this really means the bart is gone.
Have increased the malarone to total of 3 pills daily and he continues to have some herx type reactions from that -- mild sweats, some chills, etc.
Anyway, our plan is to aggressively attack babs following his 1/28 PCP office visit. Once I have the scrips in hand I will post more.
Hubby is discouraged and I am frustrated. It just seems ridiculous that he has insurance and now that his deductible has been met his catastrophic insurance is paying. So whatever meds we can get would be covered 100% as long as I do the IV's and don't use home health care. But it seems like it is pulling teeth to get the docs to write scrips. We have a 2 year window financially before the insurance deductible starts over again. Obviously I need to find some more aggressive docs.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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Remember also that Dr B said that SPECT scan improvements lag months to years behind clinical improvement.
Take heart Bea. It's just a snapshot in time. Is hubby taking some good stuff for vasculitis, ie Boloke, aspirin, high dose fish oil, EDTA?
Posts: 3528 | From US | Registered: Apr 2007
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djf2005
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Hang in there Bea, and also ditto to what CD says..
The SPECT scan can lag years behind the actual progress.
My original SPECT showed bad hypoperfusion in all lobes, only to be followed by a scan that was worse; when at the time I was feeling better.
I am about 70% now and would be interested in seeing what a scan looks like now, although I will not inject myself w/ a nuclear antigen again they can see the brain activity.
The nuclear mix they inject one with is EXTREMELY toxic and highly caustic to Lyme patients who are already overloaded w/ all kinds of toxins.
Keep keeping on Bea. I don't post on here as much as I'd like to anymore as Lyme no longer rules my life, but I browse daily and always read your posts. Your husband is extremely fortunate to have you by his side constantly reading, researching, and providing unparalleled support.
You are an example to us all of what supporting one through Chronic Lyme should look like.
Unfortunately it usually doesn't.
God bless you and your hubby.
Best.
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I had a reaction to the SPECT scan dye, or more specifically, to the SPECT machine's effect on that radioactive dye...as soon as the girl flipped the switch to 'on', it was as if she also flipped the switch to my bladder.
I immediately had a INTENSE and OVERWHELMING urge to urinate, even though I had just emptied my bladder seconds before the test. The girl scolded me the whole time for moving, but literally, it was like the machine was sending signals to my bladder to release...
-------------------- Urge Congress on EMF Safety, FCC Must Change Exposure Guidelines for Microwave Radiation Exposure: http://tinyurl.com/2cjq54y Halt Universal Broadband, A Public Health Hazard: http://tinyurl.com/3x7xrmq Posts: 495 | From USA | Registered: Mar 2010
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posted
elizza The dye they give you for these tests causes that overwhelming urge to urinate. They are suppose to tell you that you will feel that before the test?
It is the same dye as the cat scan. This happens to everyone. Usually it comes on suddenly and the subsides in a few seconds.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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bcb1200
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I find out my SPECT rescan results next week. Mine from pre-treatment was bad. Now at 90% so hopefully it will show an improvement.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Hambone
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quote:Originally posted by annier1071: It is the same dye as the cat scan. This happens to everyone. Usually it comes on suddenly and the subsides in a few seconds.
Whew! I'm glad you said that. I'd been thinking of getting a SPECT, but was afraid because I had an abdominal CAT and that dye burned the crap out of my insides, and I felt it go straight to my bladder and my bladder was on fire! I was panicking the whole time because they didn't tell me it would do that, and I laid there and had tears rolling down my face...unable to move. I swore I would never do that again.
I do fine with MRI dye, but that CAT scan die, never again.
Posts: 1142 | From South | Registered: Dec 2010
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posted
Bea, if your hubby has been feeling worse, and the SPECT tells you what is going on at the same time, then it seems like more hypoperfusion can be predicted. Maybe one could think of blood flow like water coming thru a faucet. It can be turned on full, or any degree less down to off. This is not a permanent condition. It tells you what is happening at that moment, unlike those lesions that can be seen in MRI in some people. Those probably take more lead time to come and go.
Yes, it would have been useful to know what the SPECT was showing when he felt better.
BTW, my headaches always seemed to be coming from babesia.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I just wanted to add, that I couldn't remember how to tie my shoelaces, and I had a SPECT scan, and two years later I could hold a job, but my SPECT scan was much worse (at the same place and at the same place you were). I cried for a day after I got those results, but the reality is, it sucks, but it didn't mean much to my life.
I have been following your husband's struggle for years and I am sorry for how hard it has been for you both. While no two cases are alike, my worst symptom was cognitive, and the best drugs for my brain were/are Doxy, Malarone and Rifampin (not together).
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Bugg
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Hey Bea-
I'm so sorry that you and your husband are going through this. You two are so incredibly strong.
This is a total aside, but, at any point, did your husband ever take any medication containing valproic acid (like Depakote) for seizures? The only reason I ask this is there have been reported cases of encephalopathy due to secondary carnitine deficiency from drugs such as this......
I know this is a tangent but I seem to recall at one point your hubby was on meds for seizures....
Hug to you both
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Bartonella is THE main cause of my movement disorder(s).
I have dystonia and tremors and all sorts of movement problems, caused by bartonella, for me! Low oxygen (which is shown by that SPECT scan) exacerbates them like you wouldn't believe...
Well, actually, I guess you would!
I'm so sorry to hear this, but it may just be that getting the babs levels down is allowing the bartonella to shine--has he had adequate treatment for that?
Especially what you said about altered mental status and lots of headaches. My LLMDs says bartonella causes "lots and lots of headaches" and they are one of my main symptoms as well. Do they feel like your brain is swelling, or around the front of the head or around the temple? Sometimes it feels like something is squeezing my head. I know babs is said to cause "vice-like" headaches and terrible dizziness, but Doxycycle got rid of those for me, and of course Doxy does NOT treat babs at all. (Of course I relapsed after I stopped the Doxy because it wasn't enough/doesn't completely get rid of bart.)
I know it's hard to pinpoint, and I'm sure any type of hypoperfusion can cause movement disorders, but since my dystonia, tremors, altered mental status, dizziness, and excrutiating headaches are caused by bartonella, I really hope you can discuss treating it with your doctor.
(((hugs)))
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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annier1071, but the urge didn't go away. I squeezed like crazy the entire length of the test. It didn't stop until she was finished with the test and turned the machine 'off'.
In fact, I got so mad at the technician for yelling at me to hold still and telling me I should have gone prior to the test when I had the opportunity, that at one point I did move intentionally during the scan, just to yell at her, "I DID (go to the bathroom prior to the test)!"
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